Living With Multiple Myeloma- Getting the Most from Your Doctor
Since multiple myeloma is a cancer of the blood, the primary doctors involved are hematologists, stem cell transplant physicians, and oncologists. As a result, individuals with multiple myeloma are usually treated by several doctors working collaboratively with one another. Here are a few tips to help you get the most from your doctor (or doctors) if you have been recently diagnosed or are living with multiple myeloma.
- Choose a Doctor You Feel Comfortable With – If possible, try to choose a doctor you feel comfortable with and who has a background or interest in multiple myeloma. It could also benefit you if your doctor has access to clinical trials. Remember to trust your gut and do not be afraid to visit a few doctors or specialists before deciding on a primary oncologist/hematologist.
- Educate Yourself – Try to learn about multiple myeloma before visiting your doctor. This will help you better advocate for yourself, understand the role you can play in your treatment, and may assist you with finding a doctor who is a good fit for you. Learn more about multiple myeloma here.
- Stay Organized – To stay on top of your treatment (especially if you are being treated by multiple doctors), be sure to keep track of appointment dates, blood test results, medications and dosing, and refills. Try using the Curatio app, a journal, or a planner to record information about your condition.
- Be Prepared – Before an appointment with your doctor or a specialist, be prepared with questions to ensure you won’t forget anything you would like to ask. Take notes, record the appointment, or consider bringing someone with you so they can catch any information you might miss!
- Repeat Next Steps – Repeat information throughout your doctor appointments and do a quick review at the end about next steps (for you and your doctor). Repeating what you have understood from the conversation is key to ensuring you and your doctor are on the same page. For example, at the end of your visit you could say: “I want to make sure that I have this right. So what you want me to do is this.”
- Seek a Second Opinion – Getting a second opinion may help reassure yourself and your friends/family that you are receiving the best therapy possible, and allow you to understand all possible treatment options.
- Ask About Research Studies – Research about multiple myeloma is ongoing. Asking your doctor about clinical trials can help you understand if there are any research studies that might be a good fit for you and possibly enhance your prognosis.
- Appoint an Overall Care Coordinator – Since you will likely be seeing multiple doctors and specialists, be sure you have a single point of contact who is in charge of your overall care. This person could be your family physician, an oncologist, or a specialized nurse. This will help reduce miscommunication and ensure you have one primary advocate to help you navigate your multiple myeloma journey.
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Diagnosed with Multiple Myeloma: 10 Tips on How to Get The Most From Your Doctor. (n.d.). News.Cancerconnect.Com. Retrieved January 2, 2021, from https://news.cancerconnect.com/multiple-myeloma/diagnosed-with-multiple-myeloma-10-tips-on-how-to-get-the-most-from-your-doctor-QUN7CCsQa0u623DBQUe2Ug
What is multiple myeloma? – Canadian Cancer Society. (n.d.). Www.Cancer.Ca. Retrieved January 2, 2021, from https://www.cancer.ca:443/en/cancer-information/cancer-type/multiple-myeloma/multiple-myeloma/?region=on